This is our record of the short life of our son, Samuel, and the days following. Samuel was born on August 1, 2009 with several heart defects and very sick lungs. He died on August 31, 2009. August was a holy month for us,and we are so grateful for the days we had with our third son. We are convinced that our God, who carried us through each moment, is GOOD and TRUSTWORTHY. We are learning to praise Him in new ways and depend on Him more fully as we grieve Samuel.

Saturday, August 22, 2009

What a Way to Start Life!

Samuel Erik is 3 weeks old today. What a way to start life!

Not many changes today. His ventilator settings were adjusted. Some adjustments felt like progress – the concentration of oxygen that he was given was dropped from 75% to 55% (room air is 21% oxygen). But these were compensated for by others that did more work for him (i.e. holding his breaths for longer). He seemed to tolerate these changes well and there was a little sign of his lungs doing a little bit of work (a good thing). His x-rays looked the same again. Doctors have been going after the fluid in his lungs (suctioning, saline treatments, respiratory therapy, antibiotics, bronchioscope, etc.) pretty aggressively for a while now. What I hadn’t put together until today was that the fluid is not just in the chamber of his lungs, but in the lung tissue itself. The left lung seems totally collapsed under the weight. The fluid build-up, especially in the lung tissue, is part of a larger problem (more on that in a minute), but doctors are trying everything at their disposal to help his lungs. Somehow in the midst of this, his oxygen saturation is still adequate.

The issue getting a lot of the doctors’ attention these days is Samuel’s fluid build-up. He is so swollen – eyes, face, hands, legs, feet, belly, lung tissue, etc. It looks painful. It seems that the primary culprit is his kidney function. In addition, to the treatments that I described yesterday, they have given him lasix (a diuretic) to help his body expel fluids. The catch is that these meds take a toll on the kidneys, which are already struggling, so they are giving him a really low dose. But the dose is so low that it has done little good.

Dr. Kuo gave us a little clearer picture of the cause and effect cycles that seem to be plaguing Samuel’s body. His heart is shunting oxygenated blood to the right (deoxygenated) side and now some deoxygenated blood to the left side/aorta (which sends oxygenated blood to the body, limbs, and organs) as well. On the right side this means that his lungs are getting “flooded” and taking on fluid. However, as mentioned before, the lungs are unable to process this fluid because of problems on the left side. From the aorta (left side) some of the blood getting to the limbs and organs is deoxygenated (though less than before… if indeed the pulmonary hypertension is improved). This means that these organs are not getting the oxygen that they need to function optimally. So, the kidney, intestinal tract, and liver are all struggling. Because the kidneys (the body’s fluid filtration system) are struggling, fluid is backing up. We already know what this is doing to his lungs (saturation and collapse) and body (swelling). Because his intestinal tract is struggling, he cannot take breast milk, and doctors are guarding against intestinal perforation. Because his liver is struggling, his billirubin levels continue to go. Round and round it goes. The best that I can figure, we need Samuel’s pulmonary hypertension to continue to get better and for Samuel to get healthy enough for the surgeon to be able to tie of the PDA (duct between the pulmonary artery and aorta) – or better yet for the PDA to close on its own. That or a miracle. And so we pray.

Beth, a P.A., told us today that Samuel is still a “puzzle.” She wants a name for what’s going on, but so far they can’t really figure out why he is so sick. In a week or so we’ll get back results from a chromosomal test that looks for something like 40,000 different things. Apparently Beth hopes that that might help clarify Samuel’s case some.

A simple, but profound thought occurred to me today: This is not hard for God. This is not a mystery to Him. He is not puzzled. In fact, He knows exactly what is going on. His plans will come to pass, and no purpose of His can be thwarted.

Over the last several weeks, a number of folks have commented, with apparent admiration, about our strength or the strength of our faith. The thought occurred to us, however, that faith itself is unimpressive. Everyone has faith; everyone believes something. We all see the world, respond to circumstances, and make decisions based on these beliefs. If there is anything remarkable about our faith, it is not that we believe. It is Him in whom we believe. We place our trust in Jesus Christ the Son of God, the Lord and Savior of our lives. When we have strength or peace or hope or rest or comfort, it is not because we believe really strongly. It is neither blissful delusion nor will power. We experience them because in His grace, God gives strength, peace, hope, rest, and comfort to those who come to Him. Now these days it seems that I have to fight every morning to rest in this faith... and admittedly, I am not always as successful as I would like to be. To quote an old hymn, “Oh for grace to trust Him more.”

2 comments:

I miss you guys. A LOT. I was reading/weeding through a bunch of old letters today in preparation for our move, and I read quite a few I had saved from both of you. It was so good to hear your unique "voices" through your letters. Perhaps that is why I miss you so much right now. Wish I could be there. Or Kat, perhaps we could sit in the yellow chair in our IHOP sun room and I could stroke your hair while we talk? Anyway, it struck me in reading these letters that God has been cultivating your faith and trust in Him for a long time, often through adversity. Perhaps He prepared both of you for such a time as this. I agree with your post though, that your faith is only admirable in that it is placed in the person of Jesus--our solid Rock! Anyway, please know that you, Samuel, Caleb and Joel are constantly on my heart and in my prayers. My heart hurts to think of your little swollen Samuel. I know it must be so difficult for you to see the physical manifestation of his body's struggle. I am sorry your dear little one is going through this. It doesn't make sense to me, but I know that our God has a much much bigger/softer heart than I do, and that he cares for your Samuel. I will end with things that the two of you reminded me of back in 1999.

From Kat: "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

From Bryan: "Constantly be in prayer for faith and wisdom in accepting and discerning God's will. He is sovereign and He is faithful. While that does not abolish uncertainty, it leaves no room for worry, fear or anxiety. Pray against them in the name of Jesus. God's will is perfect (Rom 12:2), He will do as He pleases (Isaiah 46:10) and that cannot be stopped or changed (Job 42:2). That gives us reason to both fear Him and rejoice in Him."

I thank God that He is the same yesterday, today, and forever and that we can place our trust in Him (because He is worthy). I will pray that He would mercifully allow you to rest in Him in this difficult time. Wish I could be there to rub your shoulders, hug your boys, or take out the trash, but I'm thankful that others are caring for you in this way. I love you lots and lots and lots. Ki

p.s. I realized the other day that I like being on the West Coast, because I feel like I get to pray for Samuel for a few hours while everyone on the East Coast is sleeping. I feel like we get better prayer coverage this way!

It is amazing that a tiny little person who has been in this world only three weeks can capture the hearts of everyone who sees his precious pictures and reads his daily updates. I have never seen or met your baby boy, but he is always on my mind and in my prayers. I find myself checking your post several times a day to check on Samuel and you both. Thank you so much for keeping us all updated on his progress! May God give you strength and peace in this time of uncertainty.